Knit Together with Threads of Energy, Creativity, and Stubborness

Shucks, folks...this entry today is tough.  For one of the last entries during WEGO Health's National Health Blog Post Month I am told to write about three things I love about myself.  Since it's sometimes easier to talk about the things we DON'T like about ourselves, I can easily say, "I don't like my baby-fine hair, my extreme eczema on my hands and feet, nor my compulsiveness to shop."  That, however, would not be completing my assignment!  So, I will dig down deep and pull out what I find to be my three best qualities:  energy, creativity, and stubbornness.  


Considering that I typically am multi-tasking to the point that I will run the water into a pitcher to get water for coffee, while simultaneously throwing out the old coffee grounds, filling the new filter with new coffee grounds, and then pulling out of the refrigerator all the items Evie will need in her lunch; I KNOW that I have a lot of energy.  My to-do lists help me stay focused and enable me to accomplish a lot during the day.  

I also have made a commitment to staying on top of many routine duties that, when put off, can create a sense of anxiety and frustration in me.  For example, I have started to do one load of laundry a day; and that helps me not feel bogged down with three baskets of laundry piling up each week.  Instead, I throw one load in the washer in the morning, switch that to the dryer before I leave for work, fold it when I get home from work before making dinner, and throw another load in the next morning to start the cycle all over again.

Along with my energy to complete household duties, people will ask me when I find the time to workout.  That is also something I need to do daily.  It's not really for vanity sake either.  I have been a big "workout" girl since 2001 when I lost 35 lbs on Jenny Craig.  I've only stopped working out at one point since then and that was when Evie was on chemotherapy.  But even then, my doctor encouraged me to find time to workout because it is my body's way of releasing stress.  I'd prefer to do my workout in the morning, but if I get a subbing job at a school, I usually have to put the workout off until the evening.  Because I spend a lot of evenings at my church for different activities and volunteer opportunities, my workout may not happen until 9 o'clock.  That's tough, but I will watch Netflix while doing a Turbojam routine that I have memorized and the time flies.

A second quality I like about myself is my creativity.  I know that I'm gifted here, and I get that from my mom.  My mom is always doing a new project, or coming up with a GREAT idea/solution for one situation or another.  With Evie, and many of her complex sensory issues, I have seen this creativity as a huge blessing, and possibly even a spiritual gift.  

For example, we started seeing big meltdowns in Evie when she started school at age 3.  She would come home from school and start yelling, and hitting, and biting the minute I got her in the door.  I call it, "Unleashing the Dragon."  I started to realize that this might be happening because she had just followed  a structured schedule at school, but would come home to no schedule at all.  So, I took pictures one afternoon of her "doing" all her after-school things:  Feed the Kitties, Eat Dinner, Take a Bath, Take Medicine, Say Prayers, Read Books, Go To Bed.  I then took all the pictures and put them into a slide show that was set to music, (Goodnight, by Laurie Berkner), using Windows Movie Maker.  Every evening when we got home I'd show her the movie, then we'd watch it after dinner to see what we had already done and what we were going to do; we'd watch it again after her bath, and then it would be time for bed.   This gave her more of a "feeling" of where she was in her day and how soon she'd be going to bed.  It's a huge blessing to me and my family to be able to think through a problem and come up with a creative solution to resolve that problem.  

Lastly, I'm stubborn.  There's no doubt about it.  I don't like to be told that I can't do something; and I will engage in conflict as eagerly as a Momma Bear protecting her cub.  Normally, one would not categorize stubbornness as a positive trait.  However, now that I am the mom of a child with special needs, that stubbornness becomes a cherished weapon in my arsenal of gifts.  Evie had been denied services through the county many years back.  They said she wasn't "delayed" enough.  Clearly, having a child who is developmentally delayed, legally blind, has Sensory Processing Disorder, chronic health issues, speech apraxia, hypotonia...(I'll just stop there); CLEARLY the denial of services was a mistake.  I appealed the decision with the circuit court and had to present my own testimony in from of a circuit judge.  The judge said to me after my appeal, "Regardless of what I decide, it's parents like you that need to continue to push, push, push for their child."  I felt pretty good about that.  But, guess what? He actually upheld the county's decision.  I then went to Disability Rights Wisconsin.  They took our case, and were able to get the decision overturned and Evie has been developing wonderfully with the plan that the county has in place for her.  

I NEEDED the stubbornness that I possess in order to continue to "push, push, push," because I was really starting to contemplate giving up.  I would think, "Really, is it worth it?"  But I would think about my grandma and how she had to push to get my uncle (who has Down Syndrome) picked up by the bus at his driveway the way the "normal" kids were.  Grandma told me once that she thought that whenever the district superintendent saw her coming down the hall he would think, "Oh no, here she comes."   A friend of the family once said to me, "Your grandmother is a champion for people with disabilities."  I was so inspired by those words, and I hope to be able to claim that same title someday for myself.  I certainly have the stubbornness to try!  

When they say that "God gives special children to special parents," it makes sense to me.  That may be a more simplified way of looking at it; but I believe it's true.  One of my favorite Bible passages tells us how this comes to pass: 

For you created my inmost being;

    you knit me together in my mother’s womb.

14 

I praise you because I am fearfully and wonderfully made;

    your works are wonderful,

    I know that full well.

15 

My frame was not hidden from you

    when I was made in the secret place,

    when I was woven together in the depths of the earth.

16 

Your eyes saw my unformed body;

    all the days ordained for me were written in your book

    before one of them came to be.

Psalm 139:13-16

God did not make me this way on accident, and he did not give us Evie on accident.  He had this all planned out.  God has taken some of my worst traits and has worked them for the good of my family.  That is truly amazing.

I can't believe my month of Health Blog posting is almost through.  I have been more energized and encouraged by pouring myself out for others to learn more about WAGR/11p Deletion Syndrome, and my thoughts on our lives with it than I could have ever imagined.  My goal is to continue to blog!  I have wanted to be a writer since I was in elementary school, and this month has been a dream-come-true in that respect. So, please, continue to check back on me and see how I'm doing!  I've even downloaded a few apps to help generate ideas and topics for me to write about~you know how stubborn I can be, I just don't want this fun to end!

My Cup Runneth Over

I marvel daily at the blessings in my life.  I've learned to count my blessings whenever my heart starts to feel doubt or fear.  Today, as is fitting, my assignment for WEGO Health's National Health Blog Post Month is to write about the three things that I am most grateful for in my life.  And ,ultimately, to name the greatest blessing of all.  Considering all that I have to be thankful for, this is not going to be easy, but I know where the heavy hitters are.   

First, I have to say that I am thankful for WAGR/11p Deletion Syndrome, and all our WAGR families around the globe.  Certainly, when we, the Heftys, are

Girls Night Out as WAGR Weekend

 in the midst of pain and heart-ache, the syndrome does not seem like a blessing; but God holds up his end of the bargain when he says that he will work all things for our good, according to his will.  Ten years ago, I could never have imagined saying, "I'm blessed to have a daughter with WAGR/11p Deletion Syndrome." Heck, I don't think I could have said it five years ago!  But, within the last two years or so, I realize that I have gotten more good than bad out of WAGR.  I'm blessed by friends around the world; friends who don't even speak my language, but with whom I can share a smile or some tears, and we totally understand each other. Our hearts are connected, so no words are required.  I find that God shows his love for us so richly through our struggles with Evie's health; he provides in ways that I could never imagine.  

Family Fun in MN

Although I just spoke of my wonderful WAGR family, I would say the second thing on my list of top blessings would be my immediate family and friends. Through the years I have felt surrounded by love, support, faith and encouragement.  They have showered me with gifts, both tangible and intangible.  I have friends and family who pray for me, and for my family.  I have friends and family who call, send letters, write e-mails, and let us know that we are never far from their thoughts.  I look around at a world of hurting people who may have never been told that they are loved; but in my life, I have been told repeatedly.  I am so very thankful for that.  

Family fun in Boston

At the tippy top of my thankfulness list is my husband.  Once we were trekking through snowstorms to go to house parties in college, and years later we were trekking through snowstorms to take our daughter to chemotherapy appointments.  It's amazing where God has taken us through our years together.  We have grown closer still to one another the past few years as we worked through couple's Bible studies like Fireproof Your Marriage.   People will take certain verses out of the Bible, several of them about marriage, and use them to humiliate Christians, when in reality, the verses, (when read as they were supposed to be, "as a whole") mean so much more, and are extremely insightful.  

Skillet Concert at Lifest 2013

For example, I've come to realize that one of the curses of original sin is that marriage will be difficult!

"Your desire will be for your husband,

and he will rule over you.” Genesis 3:16

We are set up to be at odds with our spouses from the very beginning.  Husbands desire respect and wives desire love.  So, if the wives don't feel loved, they have a hard time respecting their husbands, and if husbands don't feel respected, they have a hard time loving their wives.  Well, now, ain't that a catch-22?  When it boils down to it, that's why we need God so much in our marriages.  Because without God, it would be impossible to overcome all the challenges that we face through out our lives.  I've realized that my best friend HAS TO BE my husband. He's the one who needs to know every part of me and hold me accountable for who I am.  I'm very thankful that Jeff and I both have a relationship with God, and continue to work on staying close to each other by remaining close to the God who glued us together with his Divine Plan.  

Finally, the ultimate of all thanks goes to God.  (Shocker, I know.  I totally wasn't leading up to that at all...)  I am amazed by the stories he writes for all of us.  He is the most remarkable creator and director of all things.  Just when I think that I have a GREAT plan, God comes along and really shows me up.  I am here on earth to learn and demonstrate that God's will is perfect.  

"Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will." Romans 12:2

Henna Tattoo
in Key West

I need to look different and act differently so that others will say, "What does she have? I want some of that."  In all things, in all circumstances, I am commanded to trust that his plan is better than my plan.  It's not always easy, but as I become older, and have more experiences to look back on in which that was the case, I find my first thoughts in difficult circumstances are more commonly, "God has a plan..."

Happy Thanksgiving, to even my friends that don't celebrate Thanksgiving!  This is a day of thankfulness created here in America for us to thank our God for his bountiful blessings upon our lives.  Can you look into the "cup" that God has given you today, and see the answered, as well as the answered prayers; can you say in your heart, "It is good?" Consider the jobs you prayed for that you didn't get and how much better off you are.  Consider the failed relationship that didn't lead to a marriage and family, and what you would have missed  had that relationship not failed.  Consider the riches and wealth that you have not acquired, and how it would have changed you if you had.   God's plan for us is limitless in joy and bountiful in good and perfect things; his plan is better.

My cup is full, and it is overflowing with blessings. 

The Three Questions I Wish to have Answered

There are many things I'd like to know about how Evie processes things.  Often, when I need her to be honest about her feelings, she will start telling a totally fictional story-with characters who don't even exist. Today, my assignment for WEGO Health's National Health Blog Post is to write about the three questions that I would like to ask a patient with the syndrome by which our family is affected.  What I'm actually going to do, to put my own spin on things, is share the three questions I would like to ask Evie, but either I'm afraid to or I don't know if she would answer it truthfully.

First, I would like to ask Evie is she would rather see me cry over the things that break my heart, or if she'd rather I put on a brave face and not show her my fear.  I, obviously, balled when she was diagnosed with Wilms Tumor, when my grandma died, and when my dad died.  I know that seeing me cry heightens her anxiety, but I don't know if she'd rather I NOT cry in an attempt to help keep her calm.

When I had to tell Evie that my dad died, I just didn't know what to do.   Evie is a fixer.  She wants to make people happy.  I explained to her that Grandpa Dick had died and was in Heaven with Great-Grandma Ev; that we wouldn't have a chance to see him any more on earth here.  I recall her just saying, "Yes," and I said, "Can I give you a hug?"  Evie's reply was "No."  I said, "That's okay, but I am very sad that Grandpa Dick is gone, so I'm going to be crying quite a bit, and that's okay.  Auntie Jess and Grandma Jackie will be crying too.  It's just because we miss Grandpa Dick."  Then Evie said, "I know, I'll make a picture and that will make you happy." 

I know that seeing me cry makes Evie want to fix things, like she feels responsible for my moods.  I don't want her to feel that way, but I don't know how to communicate that to her, so I try to be as "happy" as possible around her, strong and unafraid.  I just don't know if that's the "right" thing to do. 

Another question I'd like to ask Evie is what she dreams about.  I don't know if she has good dreams, bad dreams; black and white dreams, or color dreams.  Her intense fear of blood draws makes me think that she would have nightmares about them.  Then, there was a time where she got locked out of school after all the kids had run in from recess.  Being that she's legally blind, and a little naive about going places independently, she wasn't sure quite what to do.  Thankfully, a student spotted her out the window and told the teacher, so they found Evie safe, but scared.  I wonder if she has dreams about scary situations like that now.  I don't ask her these kinds of questions, because I don't like to bring up scary topics if she doesn't bring them up, or if it's not necessary.  Her anxiety is such that when we aren't dealing with something that is frightening, I really would rather not bring it up and get her to start stewing over it again.

Praising with Skillet at
Rock the Lakes in Green Bay

The third question I would ask her is what her relationship with God is like.  A couple of years ago at Lifest, Evie accepted Christ into her heart.  It was dusk and Casting Crowns was coming up as the headlining band.  The speaker who preceded the concert had spoken about accepting Jesus as your Savior and had led a prayer of salvation.  When they asked those who had said the prayer and made a commitment to Christ to come forward, up popped Evie out of her lawn chair!  I ran after her because she was shoeless and she would be walking over gravel and surrounded by crowds!  They gave her a brand new Bible.  I'm so thankful to know that she did this, on her own, and that her relationship with God is hers to create and mold.  But I so want a piece of it.  Everyone does.  When you see Evie dancing and singing and praising; it's a little piece of Heaven right here on earth. 

Evie is unique, as are all kids; but with her speech delay, and her anxiety issues, it becomes very difficult to verbalize all of the things that a parent might be able to ask their "typically developing" kid.  I'm sure as the years pass and Evie gets older, we'll have more chats about these topics.  For now, though, I'll be thankful to share in her imaginary world, where she is 32, drives a pink Camry, and works at a coffee shop/church/school. 

I Still Remember...

I have moments in my life that are like snapshots; pictures frozen in time...

I still remember day two of Evie's life.  Day one had been filled with joyful phone calls to family and friends, (no Facebook at that time), sleep-deprived hours of trying to learn to nurse, and watching Tommy Boy.  Day two was filled with visitors, and gifts and more joyful phone calls.  On the night of that second day, I recall one specific moment above all others.  I was laying on my right side in the hospital bed.  Evie was cradled next to me, swaddled in a pink receiving blanket, with a knit baby cap on her head.  Her eyes were closed, and the room was bathed in the soft gold light of the Christmas lights hanging above my bed.  (The midwives called them "Birthing Lights.")  Evie had a baby smell that I can only describe as pepper.  Maybe that's why I go looking for fragrances now that include pepper in them.  I loved the way she smelled.  I laid there, looking at her perfectly serene face.  I felt as though God was telling me never to forget that moment.  I recall telling myself to take a mental picture of that moment, so I did.  The next day, day three, was the day we were told that something was wrong with Evie's eyes; and that began our journey toward the diagnosis of WAGR/11p Deletion Syndrome.  So, in a sense, that mental picture was the last moment that I recall having a "happy homecoming" with our newborn baby.

I still remember the ride home from hospital and wondering how or WHAT we were going to tell people.  Neither Jeff nor I understood all that we had been told.  It was confusing, frightening, and felt like a nightmare.  When we walked in the house our phone rang and it was my friend Kathryn.  This was a total "God-incidence" because Kathryn was a kidney transplant survivor, and part of what I recalled hearing at the hospital was that something would be wrong with Evie's kidneys.  I broke down in tears upon hearing her voice.  "Hey, Sugar" she had said in her sweet southern accent, "you made it home."  I spilled out to her my fears and frustrations and gave her a whole load of something she wasn't expecting.  Kathryn became a voice of reason, faith, and acceptance for me as we worked through everything with Evie.  I miss her so much because she's home now with her Heavenly Father.  I know she's with us in spirit though.

I still remember the day we got Evie's WAGR diagnosis.  Her blood had been drawn when she was three days old, but it had to be sent to Baylor University in Texas to run the actual test that would confirm WAGR (FISH analysis, it's called). When Evie was about four weeks old, we were at the clinic for her well-check.  Dr. L said he had gotten the results and read us the letter confirming that she had a deletion of the 11p chromosome, including the PAX 6 and WT 1 gene, thus confirming WAGR. We felt defeated.  Dr. L handed us some information he had found on the internet for a website www.wagr.org .  I didn't visit the website, nor did I join the support group until a couple of months later.  When I finally did though, our lives became rich with our WAGR family, and we had more support, knowledge, and creative solutions than I ever thought possible. 

I still remember being in the hospital on a Friday morning in September 2005.  Evie had been diagnosed with Wilms Tumor, and we were waiting for them to come and take her to remove her kidney.  I remember Jeff being dressed in a gown and cap so he could go with Evie and the doctors until she fell asleep.  I remember us walking with the large metal crib down the hall and Dr. K stopping us.  He said, "Hold on, let's go back to the room."  That's when he told us that he (our urologist) and Dr. P (our oncologist) were not in agreement on how to proceed.  Dr. K wanted to remove the kidney.  Dr. P wanted to contact Dr. D, who had seen several other WAGR patients with Wilms.  Dr. D was up in Vancouver at a Children's Oncology Group meeting, however, so she wouldn't be able to consult with him until next week.  We were free to go home for the weekend.  I imagined all the legions of angels, as Evie was being lifted up in prayer, I saw them all coming together and organizing the timing of the conference, her diagnosis, and the minds of the doctors~their willingness to listen and learn.  God was with us.    

I still remember chemo appointments, and the joy Evie gave all the staff with each visit.  I remember late night phone calls to the on-call doctors because we couldn't figure out if we could give Evie more morphine or not to help ease her pain.  I still remember the Baby Mozart DVD that we would watch over and over again in the hospital, and now I can't listen to Mozart anymore because it takes me back to those days in an instant. 

I remember all these scary times, but I also remember the good.

I still remember Evie creating her own sign for "play music"...she made the hand sign for "play" but then swept her hand over her opposite arm as you do when signing music.  That's when I knew for sure that, while it may come later than other kids, Evie certainly would talk some day. 

I still remember Evie walking into our room for the first time in the middle of the night.  We had just started her "brushing and compression therapy" with her OT.  She had never walked to our room before in the middle of the night, she would wake up and cry in her bed until we came to her. 

I still remember the first time I realized that even low vision wouldn't stop Evie.  We had driven through the roundabout in town.  Despite being at a lower level than the windows and being legally blind, Evie new exactly when we drove by the exit one would take to get to Culver's.  She waved and said, "Bye, Culver's."  

On the Left, Me at 18 months; Right, Evie at 24 months

I still remember the first time I saw myself in Evie.  We were in the car on the way to Minnesota and she started whining.  I turned around to look at her and she had a pouty look on her face.  It was me.  It was all me.  I had never seen and "expression" on her face before, and that must have been because of the chemo side-effects.  But they were wearing off, and now I was able to really SEE Evie and her true personality.  Go figure, when my daughter looks the most like me is when she's pouting. 

I still remember all this and more...and with God's good grace, there many memories still to come.  I know the road won't always be easy; but in all these memories, the good and the bad, God was there, and he has so much more for us to do!  With that in mind, I better wrap up this walk down memory lane and start making more memories today.   

Under Pressure~Serving in the 11p Battallion, 350th Infantry, 1st Wisconsin Regiment

Poise, Confidence and Grace under Pressure

I know Who goes before me
I know Who stands behind
The God of angel armies
Is always by my side
The One who reigns forever
He is a Friend of mine
The God of angel armies
Is always by my side
Chris Tomlin~ Whom Shall I Fear, God of Angel Armies

Today we honor and remember our Vets who have protected our freedoms and our lives out of love for our country.  The WEGO Health Blog assignment for #NHBPM, on this Veteran's Day; (the 11th day of the 11th month), is for us to write about something we must do at a particular time of a particular day in order to deal with our (or in my case, my daughter's) chronic illness.  (That just felt like a whole lot of words in a really little space). :)

For Evie, the things we  need to keep on top of, and keep at as consistent a time as possible are Evie's medications.  She takes two meds for her high blood pressure, a prophylactic antibiotic for her recurrent UTI, an eye drop for her glaucoma and an ointment to keep her eye from becoming too dry.  Blood pressure medications are usually cumulative, or they build up to a point that they should be "constantly" in your system.  So we try as much as possible to keep those with breakfast and shortly after dinner.  We are also supposed to take her blood pressures daily around the same time to make sure we're comparing apples to apples.  The eye ointment can make her vision blurrier than normal (she's legally blind) and makes her eye goopy, so we keep that at night right before bedtime.  She's not as tempted to rub her eyes if she is getting ready to go to sleep. 

Besides medications, we have to keep on top of all her medical and therapeutic appointments.  Being that Evie has WAGR/11p Deletion Syndrome (www.wagr.org), and is at increased risk for developing Wilms Tumor, we started having kidney ultra-sounds when she was 6 months old.  She was diagnosed with and treated for Wilms Tumor at 15 months old until she was 18 months old.  I can say that one NEVER skips or misses a scan after that.  I usually start dreading the day early in the week of the appointment because of the "scanxiety" Even though Evie is now 8 years cancer-free, that scan-day can sure take me back to the days of chemo appointments, port-accessing, waiting for labs to ensure blood counts weren't too low...yuck.  Makes my stomach turn just thinking about it. 

We see ophthalmology every 6 months as well.  Back when Evie was an infant and we had trouble controlling her glaucoma, we felt like frequent fliers to Dr. Struck's office.  But, once we got the pressures under control, and her eyes seemed more "stable," we were able to spread out our visits. 

The first few years of a child with WAGR's life are VERY intense with lots of appointments, lots of medications, and lots of diagnoses.  I felt like we were hearing about something that was "wrong" constantly.  We always assure the new moms, dads, or caregivers who join our list serve support group that "it gets better."  And it does.  Quite honestly, whenever we would graduate out of a regular visit with a therapist or doctor, I would often cry.  They would become the "reliables" in my life.  I'd look forward to seeing Piper at OT, or Barb at Speech, or Betsy at PT.  That's a great, and positive part to our WAGR journey; I would never meet these wonderful people without WAGR! 

So, basically, our "11th hour" rituals are just keeping on course with medications and appointments.  The predictable, the routine, the uneventful have become cherished blessings in our life because for so many years it seemed like we just couldn't cut a break. 

From a "military" perspective, it's easy to see that we enjoy our moments of "peace."  It's a good day when I don't have to don my uniform and go into "Gorilla Mom" mode;  trying to be tough and not let Evie see my fear; trying not to show my tears through her tears.   That being said, Sergeant Tammie and Sergeant Jeff will obey any and all orders that come down the line of command in order to best serve Staff Sergeant Evie Jo.  We are proud soldiers in the 11p Battalion, 350th Infantry, 1st Wisconsin Regiment.  We serve our rare disease with other amazing soldiers, and our battle cry is: In God We Trust.

¹⁰ Finally, be strong in the Lord and in his mighty power. ¹¹ Put on the full armor of God, so that you can take your stand against the devil’s schemes. ¹² For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. ¹³ Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. ¹⁴ Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, ¹⁵ and with your feet fitted with the readiness that comes from the gospel of peace. ¹⁶ In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. ¹⁷ Take the helmet of salvation and the sword of the Spirit, which is the word of God.¹⁸ And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the Lord’s people.
Ephesians 6:10-18 NIV

What Else Can We Do?

Lord Above, I need a Miracle... (quoted from Third Day's song Miracle)

Everyday I anxiously await my next chance to sit at my computer and write about the "next" topic for the 30 Day Blogging challenge from WEGO Health in celebration of National Health Blog Post Month.  Today's assignment is to write about alternative medicines for the health condition with which we live.  Now THAT is an interesting topic to explore...

The first pressing health concern we had with Evie was when she was just a newborn.  She had colic.  It may not have been a life-threatening illness for her, and colic certainly does not only strike those with WAGR; but it was sanity-threatening for me.  At the height of her colic cycle, Evie would start crying at 10 am, and wouldn't "turn off" until between 8 pm and 10 pm that night.  Yes, a solid scream-fest for about 10 to 12 hours a day.  We made a couple of trips to the ER because the doctors weren't necessarily comfortable just diagnosing "colic" for a baby who had a strange condition like WAGR.  They didn't want to just stamp her forehead with "cranky baby," and for that we are thankful. 

I had visited my midwife for my six week check up and she asked how things were going.  I talked about the colic and how horrible it was and how crazy and isolated it made me during the day.  She suggested taking Evie to see a chiropractor.  We quickly scheduled an appointment with our local chiropractor and after her first adjustment Evie fell sound asleep for 4 hours...yes...sleeping in the middle of the day...I hadn't seen her do that in weeks!!!  We took her back for quite a few adjustments over the course of the next year, and thoroughly believe it was a great therapy for her and helped her avoid many ear infections and colds that may have otherwise occurred. 

Aside from Evie's colic, the rest of the next few "ailments" are not things that are common to most infants and toddlers...unless, of course they have WAGR/11p Deletion Syndrome.  At three months old, we learned that Evie had a pretty raging case of glaucoma as well as cataracts.  She has an eye condition called aniridia, and that means there's no iris in the eye.  The eye basically stopped developing at some point which means all the systems of the eye are under developed.  She had several surgeries and countless exams under anesthesia in her first year of life to try to get the glaucoma (eye pressure) under control.  We had eye drops, of course, but the pressure needed to be decreased to help her be comfortable and to keep the optic nerve and lens of the eye healthy. 

The other diagnosis with which we were faced early on was Wilms Tumor.  Evie, having WAGR, had a 50-60% chance of developing Wilms Tumor (solid tumors in the kidneys).  We found the first signs of tumors when she was 15 months old.  She had been getting ultra sounds since 6 months of age in order to watch for the tumor development. 

Now, when one has a genetic deletion, as Evie does, involving the 11th Chromosome, then there are several genes that could be deleted; they include, but are not limited to the PAX6 gene and the WT1 gene.  These genes affect eye and kidney development.  Thus, it's obvious why Evie suffered from the symptoms that she did.  Because this is a genetic deletion, because her DNA structure is what makes her susceptible...I find it very unlikely that many "homeopathic" remedies could prevent or cure these conditions.  Therefore, we don't make her eat broccoli to prevent a recurrence of cancer, we don't avoid the sun (but we are smart about sunscreen), we don't get all militant about vitamin supplements or anything like that.  Evie underwent a partial removal of her kidney and 18 weeks of chemotherapy in 2005-2006.  She is legally blind as a result of her eye condition.  We battle her high blood pressure, which was a result of the Wilms Tumor and subsequent treatments, with a low sodium diet, weight-control, and medications.

We've done physical therapy, speech therapy, and occupational therapy as ways to counteract many of the neuropathy that results from the chemotherapy.  They have all helped tremendously.  "Brushing" therapy, Modulated Music therapy, and Joint Compressions have proven to be some of the most rewarding for Evie in helping her learn to control her anxiety and adjust to her sensory needs.

What has proven to be THE most effective, broad-spectrum, alternative medicine for Evie, myself, and my husband has been prayer.  We don't deny Evie any medical treatment that is required, don't get me wrong here.  However, we supplement the modern day medicine with a hearty helping of prayer and petition to God.  He has instructed us not to worry about anything, but instead to pray about everything.  God is Evie's greatest physician, and our greatest advocate.  God has answered numerous prayers that we have lifted up to Him.  He once answered my prayer so immediately as I was prayer journaling when Evie was taken back for surgery for her glaucoma; that as I was writing, the doctor returned to our room and said, "Well, no surgery today.  We got her sedated, I took her pressures and they were fine."  Did she need surgery later on down the road?  Yes.  But she didn't need it that day.  God gave us a break that day; a rest from our stresses.  God gave us a miracle when we needed it the most.

God answered my prayer on the way home from the one of Evie's unplanned trips to the hematology/oncology floor of the clinic in Madison. Evie had spiked a fever and she and I went in so she could get IV antibiotics; it turned out she had pneumonia.  I was crying out to Him on our way home in the car; asking Him where He was in the midst of all of this.  I said, "I know you're here.  Show me!"  When I got home with Evie, I laid her down and checked the mailbox.  In it was a card from a family member (who wishes to still remain anonymous), and a check for $1,000.  I just sat down and bawled my eyes out.  Yes, God still does miracles, God still answers prayers.  Some people would explain those things away..."You received good things because of your attitude."  "You receive good things because you do good things."  "It's the energy around you that makes people want to do nice things for you." 

While we sit in this world, trying to make sense of all the pain and suffering, why, oh why, do we deny God's miracles when they happen right in front of us?  We ask, "Where is God?" and yet He shows himself to us everyday! 

Evie has a story to tell.  God shows His power and might in her, and through her, by taking her weakness and making her strong.  I cannot deny His presence in our lives.  I will not turn my back on the greatest medicine available to all of us.  It doesn't come in a bottle, and it requires no prescription.  National Healthcare is not necessary for all of us to have access to this miracle drug.  The Creator of the Universe loves us so much that He has promised this medication; with the ultimate healing power, to all of us if only we ask for it.  The main ingredients of this medication are love, mercy, and forgiveness.  Finally, the cost of the medication is 3 nails, one cross, and King with a blood-stained crown of thorns.